With many butterflies in our stomachs, we talked with the reporter for over an hour. We think the news station did a great job! I could nit pick and tell you of all the things that we spoke about that needed to edited out due to time constraints, like when we said please don't look at our child with pity in your eyes when you see him out using his wheels; he has taught us what is important in life and it simply has nothing to do with what your legs can or can't do.
I won't tell you how we spoke about the regret of not taking Alex in to see the doctor who gave us Alex's initial diagnosis during pregnancy and encouraged us to terminate several times over. In no uncertain terms, we were given such a bleak prognosis about his life. Not that this physician is bad, just that he was uneducated about the reality of living with Spina Bifida today. We wish we could have shared with him the reality of someone living with Spina Bifida now, not what he learned from an old outdated textbook. Its not that spina bifida doesn't have its challenges but that its certainly NOT worth throwing away a life for!
I won't tell you how I wished that Alex had warmed up a little sooner and really showed his stuff by zipping around in his wheels, or how I simply wish I wouldn't have been so nervous and would have known to look at the camera and not the reporter during the taping, ha,ha.
Mostly I wish we could have said more succinctly this is the beautiful child we were told to forsake. We had no idea what Spina Bifida was and we were devastated and scared and just held on tight to each other and our faith. I wish we could have had a crystal ball back then to see Alex now. We wasted so much stress, so much worry. He (and his brother) are everything we could have ever hoped for and more, but I won't bother with any of that (he,he) so here it is:
Click on this link for better quality
The interview
If the above doesn't work, here is a taped version.
1 comment:
I came across your blog when I was pregnant with my SB child. The interview was powerful and I think that you have done a good job of it as well. My son has the same lesion level as your son. However I have observed Daniel functioning as if he was a L2 occasionally. So I think that he is a L1 with a small amount of L2 sensation and function. I hope that more people see this. You should repost this during SB awareness month. To raise awareness. Alex is amazing. So are you.
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